Publication
Social worker and chaplain activities with parents of critically ill children with cancer
Lentini N, Martinez E, Arenson M, Heap N, Michelson K · Critical Care Medicine · 2018
Learning Objectives: Social workers (SWs) and chaplains (Cs) support families of PICU cancer patients. Few data describe the activities and impact of SWs and Cs (SWs/Cs) in the PICU. This study examined the activities of SWs/Cs caring for PICU cancer or stem cell transplant (hereafter 'cancer') patients, and parents' report about their experiences with SWs/Cs. Methods: Parents of complicated PICU cancer patients (expected PICU stay > 72hours, palliative care involvement, a previous PICU admission, or a pediatric index of mortality score >=4) completed a survey at PICU admission and discharge. SWs/Cs caring for these families were invited to participate by audio recording information about their family encounters (who was present, the kinds of supports provided, and the discussion topics) and/or completing an audio recorded interview after the patient's PICU discharge. Descriptive statistics were used to analyze survey data. Recordings were analyzed using content analysis. Results: 24 parents of 18 patients provided complete survey data. Of the 67% (16/24) of parents who indicated they had met with a SW, 94% (15/16) described the SW as helpful and 81% (13/15) would ask to speak with a SW again. Of the 75% (18/24) of parents who indicated they had met with a C, 72% (13/18) described the C as helpful and 94% (17/18) would ask to speak with a C again. 3 SWs of 7 patients and 2 chaplains of 13 patients were interviewed. 3 SWs and 3 Cs submitted recordings about 34 encounters with families of 9 patients. Categories of activities included: assessing parent needs and wishes; providing emotional support; providing faith-based support; providing logistical support (e.g. obtaining meal tickets or parking passes); supporting parent self-care; and supporting parent communication with the healthcare team. Conclusions: Most parents reported positive experiences with SWs/Cs. Not all parents met with a SW or C during their child's PICU admission. SWs/Cs provided emotional, spiritual, practical, and communication support in the PICU. Future work will identify barriers and facilitators to efforts by SWs/Cs caring for PICU cancer patients and examine the impact of SW/C care on parent and patient outcomes.
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